We've Moved!

Sunday, January 13, 2008

Grace has been having some ongoing problems with keeping her formula in. We have been venting her for twenty some minutes before feeding her getting all sort of gunk out of her stomach, sometimes really mucusey stuff and other times not so much. It seemed to start when she had a little cold back in December. After much effort we finally got into see Dr. Slovan, Grace’s GI doctor.

Grace has an isotope barium test once again she had a couple back in the late summer and fall of 2006 to test for reflux. Grace went off of Prilosec back in August when she started the Ketogenic Diet mostly in an effort to reduce the carbs she was taking in and she was on a relatively low dose so it was presumed that it would have little effect on her. The past month and half have proven otherwise and her reflux has come back, her fundoplication defiantly helps with it but it looks like she will need some medication.

Grace was started on Friday on some Prevacid, On Saturday after her second dose Grace started crying and could not be contented, she was itching her ears and her faces was turning red. Joy quickly notices the Grace was breaking out in hives all over her body. We called the pediatrician they could see her which was great news otherwise we would have had no other option be the ER, and every hospital in Des Moines is already at capacity so there would most likely be a wait. All in all twenty minutes probably pass by from the initial onset to when Grace was given a shot of adrenalin and she instantly started looking better. We are sort of like a mini-first responder team, I am thinking about getting an ambulance siren installed in the Impala.

Grace had a breathing treatment as well at the clinic as she was sounding a little rasping which she didn’t until after she broke out.

We can only conclude that Grace is allergic to Prevacid, she has started a five day course of Prevacid (steroid) to help. Rather than trying to push her on another drug we will wait until Monday before determining our next course of action for her reflux.

Thursday, January 03, 2008

The caucuses are in full swing.... Kevin is there... his resolutions about funding waiver programs firmly in hand. He has become such a champion for Grace, and for other families. I am constantly in awe of his devotion to families... and as for Grace... He is so proud of her and wants everything possible for her.

Lately we've been on another emotional rollercoaster. There was a possibility that Grace could be enrolled in a clinical trial - this will not be the case. Her taking the drug Felbatol actually ended up being the last straw... the drug company doing the study did not want to have her on Felbatol due to potential side effects with the study drug. Kevin and I had begun having conversations about whether or not we would take her off Felbatol - to not have to make that decision was a relief. However there was a sadness and anger in having an opportunity to do all that we can for Grace being snatched away. Kevin and I said when all this began that we would do what we could....anything we could..... always -

Currently Grace is snug on Hoover's pad with him.... he is ignoring her. She'll be 2 soon. As I think about this its impossible for me to imagine. This beautiful girl... with golden curls...who hasn't said a word.... is wise, tough, gentle, and her own person. Serving her as her mother has turned out to be so ...... I just don't know if I have the words. Perhaps what I mean .... is that being Grace's mom is a privelege... a defining role...more than I could ever have imagined. I want her so badly to know how much I love her ---

She's doing great things.... hanging out on her hands and knees... rocking like she could crawl soon.... mad when she can't get where she wants..... rolling about the house to get where she wants... she just is not giving up.

It's time for me to put her in her pajamas... get her meds... snuggle up for our goodnight snuggle and sing her our goodnight song.